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Raynaud's symptoms?


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#1 Elizabeth28

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Posted 18 December 2009 - 12:27 PM

Hi everyone,

I've read a LOT about the symptoms for scleroderma, both diffuse and limited, the last year but remain a bit confused about Raynaud's. In particular, what are the main symptoms?

Is it the same as the normal types of temperature change we experience in our hands when in warmer or colder rooms/climates? Does it always involve a colour change?

Moreover, what distinguishes Raynaud's from 'regular' hand issues - e.g. mottled colouring, cool fingers, or fingers that are numb or tingly. Especially with regard to numb fingertips, I've got a mild case of RSI thanks to typing for 10+ hours per day AND my terrible posture! I'm not sure when RSI transitions to Raynaud-like symptoms, or, carpal tunnel. (Suppose I should keep the typing down to a dull roar!)

Best wishes to all,
Elizabeth

#2 enjoytheride

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Posted 18 December 2009 - 01:54 PM

When I was first diagnosed, my doctor said I had atypical Raynaud's- various fingers would get cold but I didn't have color changes. This year, I have started to have one hand that turns white then red so I guess I am progressing. Also my nose and cheeks have started getting cold.

I also had what I thought was carpal tunnel due to typing. But it has gone away since I stopped work. So I don't think it was part of Raynaud's.

Others will be on shortly I'm sure with a lot more information than I can offer. From what my doctor said, not all Raynaud's is the same.

#3 Snowbird

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Posted 18 December 2009 - 01:56 PM

Hi Elizabeth here's my 2 cents worth.

I can tell you that for years my hands hated the cold but showed no signs of anything then one winter, I couldn't seem to warm my feet at times no matter what I did and then the following year after that episode my feet started turning what I referred to as a yellowish colour for months on end, just not right but not blatant either so I couldn't be 100% sure that anything was really going on.

Well, low and behold next step the feet started turning white all the time whenever I was outside in the cold, numb and tingly when it happens sometimes, can get painful too stops tingling once the blood returns to the area (I wonder if that could be part of the key to your question, after the episodes it stops tingling?)but then again, who knows?

The next fall after that, hot and heavy came my hands, white and red, very distinctive, went from medically interesting looking to creepy looking in my mind, there's no missing it when you actually see it happen and my feet followed immediately, with the red colour, very distinctive. So, I guess maybe we could say that Raynauds might be distinguished by being active (episodes) in the cold...can also turn colours if it's too hot (in the shower) vs 24 hours/day, not sure?? Some people turn blueish coloured as well, I understand that white is when there is no blood flow, red is when the blood rushes back, and blue is when there is no oxygen to the extremities.

I'de still like to understand when it's time to take medication for it myself. I don't know if medication is warranted if there is not a lot of pain? I personally struggle with taking a medication if I'm not in pain all the time but if it slows anything down, then it would make sense to take something, ughh!! Question for my doctor, next visit.
Sending good wishes your way!

#4 LisaBulman

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Posted 19 December 2009 - 04:34 AM

I find Raynauds very difficult to control. I have suffered with it for 18 years now. Almost from the beginning I've had ulcers as well. Any temperature change will set off an attack. Over the years I have tried numerous medications to try help with the symptoms of Raynauds. Currently I am on a trial medication but the side effects have been horrible so incrementing the dose is a very slow process. I am hoping to get to a dose, with no side effects, that will work and make my Raynauds controllable.

Here is some information on Raynauds from our sclero.org website. I have found that raynauds symptoms are more pronounced than other hand issues. At this point for me, every hand issue is a direct result from Raynauds

Hugs,
Lisa
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#5 Elizabeth28

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Posted 19 December 2009 - 07:29 AM

Thank you, everyone, for your responses. I haven't had any definitive experiences with Raynaud's yet - beyond obsessing over potential symptoms (I'm positive for ANA and scl-70 but haven't exhibited any signs/symptoms - knock wood!) - and have always wondered how you tell if you are experiencing it or not....

Your answers have been a huge help. It's interesting that I also have carpal tunnel that goes away when I stop typing. It's been this way for a couple of years - thanks to me hammering out a massive thesis and then writing like a fiend even after that. :-(

I have to keep reminding myself to sit properly and be careful of how I use/position my hands when I'm typing or I run into problems. The numbness and tingling isn't associated with any change of temperature in my fingers or hands (e.g. they're cold), so I suspect it's nerve compression from the carpal tunnel.

I've also heard that numbness can be from a B12 deficiency - has anyone else had problems with that?

#6 Amanda Thorpe

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Posted 19 December 2009 - 02:01 PM

Hello Elizabeth

I have mild Raynauds diagnosed with a capillaroscopy and thermography. My hands and feet will become white in response to cold and stress but never blue or red. Cramp is the worst Raynauds symptom for me, if I go out and my feet get cold I know I will have cramp on and off all night!

Take care.
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#7 Joelf

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Posted 20 December 2009 - 03:20 AM

Hi Elizabeth

I also have Raynaud's & this year my symptoms seem to have been much worse. Like Amanda I was diagnosed by capillaroscopy & my fingers, particularly on my right hand, go completely white & become painful & tingley.

Also the tips of my fingers have developed very painful little cuts on them, probably to do with the dry very cold weather we are having at the moment.

I also had bi-lateral Carpal Tunnel syndrome which was operated on earlier this year so my symptoms appear to be fairly classic. :(

Great fun, eh?! ;)

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#8 warmheart

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Posted 20 December 2009 - 09:29 AM

Hi Elizabeth,

Looking back, my Raynaud's must have started 15 years ago or more, but I never asked about it and wasn't sure whether I had it until my primary care physician happened to observe it about a year ago and that's how it was diagnosed.

It started with having a lot of pain in my fingers whenever I'd hand-wash clothes in cold water. Then about 12 years ago or thereabouts suddenly anybody I touched would startle because my hands were so cold. I didn't really think anything of it.

Maybe a couple of years after that I did start noticing that in the cold weather my fingers were kind of purple, but I thought maybe that was normal. In the past couple of years or so it's progressed pretty quickly; now I have Raynaud's pretty constantly and the blue, white, and red color changes. But I never mentioned it to the doctor; it was diagnosed not too long ago because she happened to notice it.

One thing I've never seen listed as a symptom of Raynaud's, but has been by far the worst part for me, has been horrible hand and foot cramping whenever I've been at all cold or tired. I've noticed that several others have mentioned the cramping; is it really a recognized Raynaud's symptom?

Hugs,

warmheart

#9 Amanda Thorpe

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Posted 20 December 2009 - 12:48 PM

I was advised by one of the rheumatology specialist nurses that the cramp I was experiencing was caused by the Raynaud's. The nurses are based at a hospital that's a centre of excellence for sclero so I accept it as a symptom but I don't think it's a well recognised one.
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#10 Buttons

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Posted 22 December 2009 - 01:45 AM

My Raynaud's started very mildly about 12 years ago, first with just one or two fingertips going white then blue and finally bright red. It got gradually worse with the whole of my hands going white and then the other colour changes and that's really when the pain set in for me, numbness, tingling and burning. My general practitioner had seen this happen lots of times and diagnosed the Raynaud's. Finally my rheumatologist did the capillaroscopy nailfold test and confirmed the diagnosis of Secondary Raynaud's. It doesn't take much to trigger mine off and some attacks do last for quite some time.

Amanda, I get lots of cramp in my legs and feet but I was told I needed to drink more water! It doesn't make any difference so perhaps it is my Raynaud's.

Keep warm everyone and have a good holiday,

Buttons

#11 Sharon T

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Posted 22 December 2009 - 12:25 PM

Good to know that the hand and foot cramping is related to Raynaud's. That is definitely better than it being a whole new sclero thing! :lol:
Sharon T.

#12 KarenL

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Posted 22 December 2009 - 12:56 PM

Raynaud's really hurts. Your fingers are SO cold that it is extremely painful, then when you try to warm them by running under warm water it hurts even worse. Raynaud's makes people look at your hands and say, what's wrong with your hands!!! Your fingers can almost always turn some shade of grey/blue even in air conditioning. Even if it's just spring and the temp is below say 75, you're cold. You wear coats and blankets when others are still in T-shirts. September is the start of winter for people with Raynaud's and it's not spring till June.

Swimming? Forget it, only in hot tubs. The only time you are comfortable is when everyone else is BOILING. In the winter your hands are white and hurt really badly. The tips crack and ulcerate and a tiny crack can feel like a laceration. One year I got gangrene and my finger died right down to the bone. I was on strong pain medications for 8 months and was referred to a pain specialist. You carry mittens everywhere and they multiply in your house and car like bunnies. You are angry with co-workers who turn on the fan and you fight with everyone about the AC in the car. Yes, I have it bad, but I hope I shed some light on the differences between just cold and Raynaud's. I hope you don't have it!

#13 Canuck Ken

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Posted 03 January 2010 - 03:43 PM

Hi Folks,

I am going through my first winter with a Raynaud's diagnosis. So far, the episodes are only affecting a few fingers on each hand. One finger is particularly bad as the tip of the pad is almost raw looking but even more painful are the tiny cracks that have developed at the upper corners of the nail. The cracks are so painful that almost anything that touches them will cause me to grimace and almost bring a tear. Has anyone discovered a cream that might hasten the cracks to repair themselves or at the least provide some relief. Currently I am using petroleum jelly and wearing a bandaid.

For information, I instigated an investigation of my Raynaud's symptoms as my father passed away from Sclero at 44...50 years ago. So far the doctor isn't confirming sclero but I am on his watch list.

Thank you for any help and for listening.

Canuck Ken

#14 tngrits

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Posted 04 January 2010 - 06:34 AM

Karen - Hi. My Raynaud's is like yours except I have never experienced the ulcers. My fingers stay cracked at the nail and that hurts alot. I've had the Raynaud's 15 years now. It affects my hands and feet. They turn white and then purplish black. My hands stay very red all year but worse in the winter. It is so embarrassing when people notice which happens a lot when I am paying for something. They say "oh my, what is wrong with your hands." Not fun. :temper-tantrum: Oh well, I am just thankful I don't have the ulcers yet. I try to find a bright side to this terrible disease. Gotta go. It's a beautiful day outside except it is freezing! Hope everyone has a good day.
Linda